I was diagnosed with PF as the result of an open lung biopsy in 2003. At that time, I was given 6 months to live as my 02 diffusion was only 32%. 25% is a death sentence. My lung volume was only 40%. So much for formaldehyde being innocent! (My antibodies to formaldehyde were 350% above normal safe limits.) All this from installing new carpeting. After we found the cause and removed it, I was given 6 years to live as my 02 sat increased as well as my lung volume. However, both were still at only about 50% of normal.
I began my personal battle after the open lung biopsy. However, I did not understand the cause of death for people with PF until I needed to stop the car (when I was driving I suddenly needed to sleep). I stopped in the parking lot of a rehab place and went in to ask if I could lie down somewhere. When I explained the reason for my request, the owner came out and explained 'respiratory acidosis' to me. He also explained it came from the inability to adequately release C02 from the lungs. That's when I learned the real cause of death from PF...excessive C02 in the lungs (and brain). That was in 2005. It began my search for answers which I could not get from the MDs. I gradually began lowering my carbs...and improving. When I stumbled upon SKD (2007), I decided to join the group (parents of epileptic children.) These parents gave me the mail address of a nutritionist who worked with them. With this help, I began the old fashioned ketogenic diet. The biggest improvement came when I took my fat to 90% of my Total Caloric Intake, my protein down to 35 grams and my carbs to less than 10 grams. It took me 12 weeks to accomplish this. The results, however, were fantastic. After 6 months on the most extreme form, I graduated to the Modified Ketogenic Diet (80% fat, 60 grams of protein, 10-20 grams of carbs). I remained on this diet for about 6 years. Then I decided to increase my carbs to 75 grams...to see what would happen. Initially, all seemed fine. However, very gradually, problems surfaced....so slowly that it took me 2 years to put the increase in carbs with the problems (increased need for sleep during the day, lower 02 sat during sleep at night, etc.....all signs of respiratory acidosis!). I immediately returned to SKD. That was last December. I did not get the results I wanted until I went back to the original (90% fat, 35 grams of protein, <10 grams of carb) in early April. That is where I am now. However, I have a life again!
When I started in 2007, I did not have a blood ketone monitor. Now I use the Keto-mojo monitor. Also, I did not use flaxseed oil. Instead, I used olive oil.
Hope all this helps.